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Looking back on Family Advocacy Day with Deyven Ferreras

Above, Deyven Ferreras (left), his mother and his sister take a walk near the Lincoln Memorial.

Deyven was one of two patients from Boston Children's Hospital who traveled to Washington D.C. this summer to represent the hospital at Family Advocacy Day. This piece was originally published on Boston Children’s Today.

by Deyven Ferreras

Family Advocacy Day experience was nothing like what I expected it to be.

For starters, it was much hotter than I thought it was going to be in Washington D.C. I sweated more sightseeing there than I have playing basketball in my home state of Rhode Island. Halfway through our first day in D.C., we found out that Family Advocacy Day was taking place exactly at the same time as a heat wave; it was very convenient.

I was shocked to see that the Children’s Hospital Association (CHA) had flown people in from all across the country. I originally assumed that the CHA only had the power to fly patients and families from one part of the country relatively close to D.C. During the two days I was in town for the event, I met amazing families from different states like Massachusetts, Nebraska, California and many others. They told me their great stories and about the obstacles that they encounter every day.

Talking with them gave me a different perspective because until then, the only obstacles I knew of and could related to were the obstacles that I knew about and had experienced – ones that involved heart conditions. I did not know about how other families have gone through in order to get care for their own conditions. Although I couldn't always personally relate to the struggles these families face every day, it was amazing to see just how resilient families can truly be.

Another thing that surprised me was how fun the patriotic dinner would be. Since I was the oldest hospital patient representative there, I thought I wasn't going to have much fun at the dinner. But there were so many activities to partake in that it would be impossible to not have fun there. I got a caricature portrait drawn of myself playing basketball, which is hung up on my wall right now. The food at the dinner was so good that one serving was not enough, I had to go up for "seconds."

Finally, my meetings with the Senators and the Representatives of Rhode Island did not go the way I expected either. The Rhode Island Senators and Representatives meet with tons and tons of people, so I was surprised to see that they actually listened to my story and genuinely showed me that they cared. They even tweeted about my meeting and it made me really happy to see that they didn’t forget about me after the meeting was done. It was great to see that even throughout their busy days at work, they still remembered my story and me. Hopefully they vote in favor of the Ace Kids Act.